Sunday, February 27, 2011

Despite all the media attention this week about tonight’s Academy Awards ceremony, I have little interest in this annual event. I don’t care what the celebrities are wearing, and we haven’t seen any of the movies nominated for awards this year. In fact, I can’t even remember the last time we went to a movie theater; we only see movies when they come to the cable movie channels we subscribe to at home. Because movie theaters tend to be loud and crowded, we don’t take Alex to the movies; moreover, he really doesn’t like movies of any kind anymore. When he was younger, he loved the Disney movie videos and watched them over and over, and he would even rewind the videotape to watch certain favorite scenes repeatedly. Now he prefers watching sports or game shows to anything that has a plot, so I can’t imagine him sitting through a two-hour movie. In the spirit of Oscar’s big night, however, I thought today was an appropriate time to review some of the best movies made that feature characters with autism.

Recently, I watched Dear John on cable and was pleasantly surprised that the movie adaptation of the book is actually quite good. While I am a huge fan of Nicholas Sparks’ books, the movies made based upon his books are often embarrassingly bad. The movie Dear John, however, portrays the characters well, especially John’s father, who apparently has the autism spectrum disorder Asperger’s syndrome with his obsessive interest in coin collecting and difficulty interacting with others. In addition, the young actor who portrays Savannah’s stepson, Alan, who has autism, captures the typical characteristics of autism, such as poor eye contact, in a believable way. In contrast, the young boy with autism in the thriller Silent Fall, starring Richard Dreyfuss as a therapist working with the boy after his parents’ murder, has a strange and uncanny ability to imitate voices, which seems quite untypical of children with autism. A much better movie with a similar plot is Mercury Rising, which stars Bruce Willis as an FBI agent who must protect a boy with autism who possesses savant code-breaking skills after his parents are murdered. Even though the boy is nonverbal, the bond that develops between him and his protector is interesting and endearing as they face several crises throughout the movie. Another movie that addresses some of the issues of autism is House of Cards, in which Kathleen Turner plays the mother of a daughter who becomes mute and obsessive after the death of her father. In trying to understand her daughter’s behavior, which has similarities to autism, she goes to a school and observes children with autism. In one scene, she watches two children “talking” in numbers, and she figures out that they are sequencing prime numbers. To join in their “conversation,” she says prime numbers, too, and then she can interact with them. Since Alex has a fascination with prime numbers and has memorized many of them in order, this movie scene resonates with me. Also, the mother’s realization that she must have an understanding of her daughter’s viewpoint and concerns in order to communicate with her makes perfect sense to me. When we have worked with Alex to understand the source of his concerns, we were then able to relieve his anxiety. In all of these movies, the “typical” characters struggled to understand the unique perspective of the children with autism but were eventually able to connect and communicate with them in some way in order to help them, which is a positive message these movies can send.

While these movies with minor characters who have autism offer a new perspective, two movies featuring adults with autism as major characters clearly stand above the rest. Last year’s HBO movie Temple Grandin adeptly depicts the life of the title character and her struggles with and triumphs over autism. The outstanding script and cast, including Claire Danes skillfully portraying Temple Grandin, deservedly won several Emmy Awards and Golden Globe Awards. I found the visual representation of how Temple’s mind processes ideas especially intriguing as she catalogs all the mental pictures associated with the words she hears, for instance, picturing every shoe she has ever seen when she hears the word shoe. Since Alex has told us that he sees words and numbers in his mind, I suspect he also sees pictures as he tries to process what is said to him. While I thoroughly enjoyed the movie Temple Grandin, my favorite movie about autism is Rain Man, which I saw before Alex was born, long before I knew we would have a child of our own with autism. Certainly, the excellent script, directing, and acting made it deserving of the Academy Awards it earned that year. While some have criticized the movie for stereotyping people with autism as all being savants, the character of Raymond with his fears and talents makes him much more than a flat character that one might expect from a person with autism. Before Alex was diagnosed with autism, I felt great sympathy for Raymond, but after he was diagnosed, I identified with his brother Charlie, who takes on the role of caretaker. While Charlie’s motivation and impatience are less than admirable, his frustration is honest and justifiable. I also admire his flexibility and resourcefulness to keep Raymond from having meltdowns—from lying that he’s from the Nielsen rating group so that Raymond can watch People’s Court on television with the family in Iowa to using a protractor to cut Raymond’s fish sticks in half to have the “proper” number for Raymond’s inflexible routine. I doubt there are few parents of children with autism who have not at one time or another ranted about an obsession that was driving them crazy, such as one in which Charlie yells, “Underwear is underwear! It is underwear wherever you buy it!” Although we’re not proud of those moments, we are human, and that human nature in Charlie makes him believable and likeable, even to the point Raymond forms an emotional connection with him in a short time. The final scene in which Raymond says goodbye to Charlie, saying, “One for bad, two for good,” always moves me; definitely, Rain Man gets “two for good” in my book for how well it shows people with autism and their ability to interact, albeit in unconventional ways.

“And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!” Psalm 90:17

Wednesday, February 23, 2011

Although, like Alex, I tend to prefer a comfortable rut, change can be a welcome relief. Recently, we have noticed that some of Alex’s obsessions seem to be dwindling, which indicates progress. Even though many of his interests remain the same, he doesn’t act as obsessed as he once did. The other night, Ed went through Alex’s browsing history on his laptop, which we do from time to time to make sure he is not Googling anything he shouldn’t be, and, as usual, we find these checks to be an interesting glimpse into Alex’s mind. On this most recent check of the browsing history, Ed wasn’t surprised to find that Alex had been searching sites for Blackjack games, math games, and clocks, three of his favorite things. What was unusual were some of the questions he asked Google: “Can earth collide with a comet or asteroid?” and “Is it rude to ask someone’s age?” and “How do you live to be 100?” In addition, he was checking out patterns of Easter dates and urine tests. The boy certainly has a wide range of curious interests. Even though he apparently is pursuing his questions about health, the future, and time, he isn’t constantly asking us questions or talking endlessly about these topics. Perhaps, like many teenagers, he thinks his parents don’t know anything anyway, so he doesn’t bother asking us and goes directly to the Internet for his information.

In addition to refraining from chattering on and on about his obsessive interests, we have seen other changes that make Alex’s behavior more typical of a boy his age. For example, not long ago, he was driving us crazy with his need to be entertained constantly or at least told what he should do to keep busy. He would ask us seemingly hundreds of times a day, “What do now?” If we didn’t come up with ideas quickly, he’d become frantic, worried that he may be without activity for a while. Lately, he’s been hanging out in his room reading and playing handheld electronic games and doesn’t seem to have any problems finding things to fill his time. Another issue he seems to be overcoming is eating with others who are wearing clothing with words or logos on them. Previously, he would not open his mouth if anyone else were wearing what he termed “bad imagine clothes,” which took in about anything from Nike swooshes to t-shirts with writing to shirts with the Chaps C logo. No matter how tiny that brand logo may be, Alex spotted it and refused to eat with the person donning it. Now, he doesn’t seem to notice or care what others are wearing, which is easier. Another eating-related issue that has improved is his need for everyone to be seated before he can eat. While this seemed like a mannerly thing to do, he was actually annoying because he would whine or complain impatiently that he was hungry, yet he couldn’t eat until everyone was at the table. In fact, Alex would only eat while seated at a dining table, even though as he got older, we didn’t care if he ate or drank in the family room. He insisted upon eating at the table, and if he were having one of his snacks, he didn’t appreciate anyone walking through the kitchen, interrupting his feeding time. Now he has been taking his juice and snacks throughout the house, freed from his ties to the kitchen. Although we don’t mind because he is a very neat eater, the only problem is that we are finding cups left in various rooms: the dining room, the family room, our home office, his bedroom, and even the bathroom. Yet another obsession that he seems to be breaking free of is his insistence of snacks at exact times. Instead of demanding snacks at 3:30, 8:00, and 9:00, he’s more flexible about the times and sometimes even skips a snack time if he’s not really hungry. For someone who is focused upon time and eating, these minor changes signal major progress.

Another improvement we have seen that is likely related to the easing of his obsessions is the frequency, duration, and intensity of his meltdowns. While these have been decreasing over the past year or so, we have seen Alex learn to manage his anxiety much better. Even though he still recites his list of grievances, and his hands shake, he rarely needs to act aggressively through yelling or hitting. Typically, these meltdowns are triggered by his obsessions, and we simply need to talk him through the concerns he has for them. For example, the other day, he started mumbling about wanting to get rid of his graphing calculator because he never wanted to use it again, and he was insistent that I throw away his 2002 World Almanac because he didn’t need it anymore. In addition, he once again reminded me that he no longer wanted to play the phone call points game he had devised a few years ago. Although he was upset, he remained reasonably calm as he tried to take control of his anxiety by wanting to get rid of things from his past that he previously enjoyed but no longer wanted to be part of his current life. Once I reassured him, and he calmed down, he broke away from another obsessive need he has had for the past few years—to go two places every day. Unless we have extreme weather conditions, Alex typically insists upon going to a couple of places every day. After his anxiety attack subsided, I asked him if he wanted to go places, and he was adamant that he did not. Thinking that I had misunderstood him, I rephrased the question to confirm that he had chosen not to go anyplace that day. He looked at me directly and replied, “Correct.” Apparently, he was willing to break free of another routine he had established. I often think that Alex imposes order and routine into his world because his sensory issues and language delays make it chaotic and confusing. Maybe as he overcomes his challenges, he obsesses less and feels more comfortable, which is a blessing for us all.

“Dear brothers and sisters, I close my letter with these last words: Rejoice. Change your ways. Encourage each other. Live in harmony and peace. Then the God of love and peace will be with you.” II Corinthians 13:11

Sunday, February 20, 2011

This week on The Dr. Oz Show, one of the topics was “What Causes Autism: The Debate,” which, of course, caught my interest enough to watch. For this show, half of the audience included parents of children diagnosed with autism, and the other half were parents who were concerned that their children may have autism but had not yet been diagnosed. His guests were a panel of six pediatricians who appeared to be there only in case they were needed to break a tie vote; pediatrician and pro-vaccine author Dr. Ari Brown; Dr. Bob Sears, who treats many children with autism; Irva Hertz-Picciotto, a Ph.D. in public health services who has studied environmental issues with autism; and Alison Singer, a parent of a child with autism who has worked for two major autism organizations. With the exception of Drs. Sears and Hertz-Picciotto and one dissident doctor sitting among the lab coat panel of six, Dr. Michael Gabriel, the deck seemed to be stacked in the pro-vaccine camp, who clearly outnumbered these experts. Since the first topic of potential causes was the role of vaccines in autism—a hotly debated topic—the pro-vaccine experts cited scientific studies that show there is no link between autism and vaccines. However, they failed to mention that most of these studies were funded by the pharmaceutical industry, the manufacturers of vaccines who stand to lose millions of dollars should their research show any other results. The pro-vaccine doctors described the dangers of diseases that immunizations prevent and the importance of “herd immunity,” making the majority of the community immune to disease to protect those who are not. The choice of the term “herd” is a rather unfortunate one, comparing children to cattle, but perhaps this blind following describes what is really happening. On the other side, Dr. Sears did not advocate forgoing immunizations; he simply suggested a safer schedule that spread out the vaccines so that children were not receiving as many at a time. Even Dr. Oz admitted that he had used this staggered schedule with his own children’s vaccinations.

The second possible cause of autism discussed on the show was environment, including diet, chemicals, medications, and even proximity of living near freeways. Dr. Hertz-Picciotto pointed out that the environmental causes are not just one source, but many, many causes—“a minefield,” as she described it. In addition, she clarified that environmental causes are defined as anything not genetic. I wish the camera had shown the reaction of the pro-vaccine doctors at that point since many who believe that vaccines are not the cause are strong proponents that autism is genetic, which is essentially a new way of blaming the parents. Similarly, the third issue dealt with the age of parents as a potential cause of autism: some studies have indicated the older the parents, the more likely the incidence of having children with autism. Considering how challenging dealing with autism is, maturity of parents is probably a blessing in disguise. When Alex was diagnosed with autism, I was in my early thirties and had gained some wisdom and patience I did not have in my twenties, both of which I needed to deal with the challenges we faced. Dr. Oz summarized the discussions of autism, saying that it is “a national crisis,” and he went on to compare children with autism to “canaries in the coal mine,” suggesting that children with autism reflect the problems of our world, such as pollution. He then stated, “We see it first in them [children with autism].” I totally agree with Dr. Oz on both points: autism IS a national crisis with 1 in 110 children being diagnosed, including 1 in 70 boys, where the incidence is much higher than girls, and these children are the canaries in the coal mine who have a vulnerability to something that affects their neurological systems. Certainly, the causes likely vary from child to child, but with Alex, we know from medical tests that he had mercury, lead, arsenic, and aluminum poisoning that had to be treated. His body clearly cannot detoxify itself properly, and the mercury and aluminum present in the childhood vaccinations he received were harmful to his developing brain and nervous system. Moreover, we know from food allergy tests that he has sensitivities to the food proteins glutens and caseins; therefore, placing him on a strict diet eliminating glutens and caseins has prevented him from having digestive problems that many children with autism face.

Although environment has played a major role in Alex’s autism, I think that genetics have played some part, as well. Studies have shown that mothers with autoimmune disorders often have children with autism. In a sense, we, too, are canaries in the mine, and I suspect that autism itself is an autoimmune condition in which the immune system, taxed by environmental stressors, attacks the digestive and nervous system. My autism mom friends have dealt with their own autoimmune issues from MS to endometriosis to allergies, and I was diagnosed with two autoimmune conditions of my own. When I was pregnant with Alex, my doctors discovered I have chronic ITP, or idiopathic thrombocytopenic purpura, a blood disorder in which hormones cause my spleen to destroy healthy blood platelets, putting me at risk of bleeding. A few years later, I was diagnosed with the autoimmune condition chronic thyroiditis and had most of my thyroid surgically removed. Thankfully, neither of these conditions affects my daily life anymore, other than I keep an eye on my platelet count and have to take thyroid medication for the rest of my life to regulate my metabolism. Generally, Alex and I are both very healthy and rarely get sick; however, we probably are canaries in the mine whose bodies react to environmental toxins by attacking themselves. In the conclusion of the autism segment, Dr. Oz described autism as “a neurological disorder that robs a child of an emotional foundation.” In my opinion, Dr. Oz really misunderstands autism if he believes that. Other autism moms and I have been comparing notes on that statement and believe that our children not only possess an emotional foundation but actually have stronger emotions than typical people do. We feel that our children retract from overwhelming situations or overreact when they are placed in circumstances that jolt their sensitive nervous systems. I know that Alex frets over my health and gets upset if he sees me crying; he cares but doesn’t always know how to express his emotions because his own nerves are so jangled he doesn’t know what he’s feeling. While I don’t think Dr. Oz’s show solved the mysteries of autism, I hope and pray that greater awareness and a more concerted effort not only to find the cause but also the cure for autism will benefit thousands of children so that they and their families can enjoy life to the fullest. I look forward to that day with great anticipation and know for certain that God can bring that to pass.

“O Lord, You alone can heal me; You alone can save. My praises are for You alone!” Jeremiah 17:14

Wednesday, February 16, 2011

Last week in my blog entry, “Inquiry,” I described a recent experience in which a special education representative asked me some rather nosy questions. Instead of asking about Alex and how autism affects him, she seemed to be more curious about our parenting skills, inquiring about how we had taught Alex about sexuality, why we home schooled him, what we predict his future holds, and what we would do differently. Perhaps I have interpreted her actions unfairly, but I feel she was more interested in putting me on the spot than taking advantage of learning more about autism. To be fair, until we had Alex and learned more about autism, I probably wouldn’t have known what to discuss with a parent who had a child with autism. Autism can be the proverbial “elephant in the room” that some people may not be comfortable discussing, but avoiding the subject can be equally difficult. From our experience, people can talk about Alex and his autism in various ways that show interest and concern, and we have been blessed to have family and friends who have shown their support through their thoughtful comments and questions.

My favorite topic of conversation is Alex, so when people ask about him, I’m happy to talk about him. Even asking, “How’s Alex?” indicates a caring I always appreciate. Depending on my closeness to the person who asked and how Alex is actually doing at the time, my response may range from a cursory “Fine” to a more detailed update of his current status to a completely honest assessment of his recent moods and behaviors. The latter explanation is usually only given to very close family members and friends or my autism parent friends who understand the ups and downs of life with autism. Another question I always appreciate is, “What are Alex’s current interests?” or a similar question: “Does he still like ___?” Because Alex has unusual interests, these conversations are usually lively, and I’m pleased to share what topics he’s currently pursuing, especially to those who have followed his progress along the way. Moreover, I am grateful that these questions not only show an interest in Alex but also a concern for him as a person, not just a special needs child. In an earlier blog “Support,” I discussed how friends had given Alex various things that reflected their knowledge of his special interests. Not only do I appreciate such gestures of kindness, but I am always especially pleased to know that people care enough about him and me to do something nice. Last year, my cousin Diane was traveling around the Southern United States, and knowing Alex’s interest in geography and meteorology, she sent him postcards from her various destinations along the way and included the current weather conditions in her notes to him. Because he was so enthralled with those postcards, he has saved all of them for future reference. Similarly, after my friend and co-worker Jody attended the NASCAR Brickyard 400 at Indianapolis Motor Speedway last summer, she brought her lanyard and the tickets it held for Alex, knowing that he especially likes that particular race. Not only did Alex shudder when I brought it home for him (as he does when he is especially pleased), but he slept with the souvenir from the race, which he only does with his most prized possessions. I often think that Alex has a special sense about people who genuinely care about him and especially treasures what those people give him.

Aside from showing interest by asking general questions, I would suggest four basic hints for those who would like to show support for parents whose children have autism. 1. SHARE—If you hear about new autism research on the news or read an interesting article or book about autism, pass along this information. I always appreciate when someone tells me about something new they’ve heard or read. Often, my friends will preface this news with, “You’ve probably already heard about this, but…” While I try to keep up with all the latest autism research, I still am interested in any information others have seen or heard.2. SYMPATHIZE—While I don’t need or want pity, I do appreciate understanding of my unusual situation. Many times I cannot commit to various tasks or engagements because Alex needs me. Moreover, at times we have to cancel plans suddenly because Alex’s behavior prevents us from taking him with us or makes us hesitant to leave him. Canceling at the last minute is always a possibility in the unpredictable life with a child with autism, and I am always grateful when others understand that some things can’t be helped.3. SUPPRESS—While I’m certain some people offer advice trying to be helpful, unless you’ve raised a child with autism, you really don’t know all the ins and outs that may have gone into a parental decision. Many times, we choose our battles with Alex, and ignoring some behaviors may be necessary to prevent a full-scale meltdown. Even if you don’t agree with methods or therapies the parents are using with that child, you need to trust that they are doing what they believe is best for that child.4. SPOTLIGHT—Although autism presents many obstacles, we try to focus upon Alex’s strengths and use those to overcome his weaknesses, and we are thankful to others who do the same. Certainly, his language, social and fine motor skills are delayed, but he is funny, smart, and obedient. While his handwriting is barely legible, he can type faster and more accurately than either Ed or me. When other people point out Alex’s good qualities, they endear themselves to us because they look past the weak areas and see his blessings and gifts. I know that Ed and I are thankful for the support we have been given, and I like to think that there are special places in heaven for those who have been understanding of children with autism, like Alex, and who have shown them kindness through their caring and concern.

“This is only my suggestion. It’s not meant to be an absolute rule.” I Corinthians 7:6

Sunday, February 13, 2011

As far as holidays go, Valentine’s Day isn’t high on Alex’s list of festive days. Since he has been home schooled for nearly all of his education, he doesn’t partake in the annual classroom Valentine’s party with the exchange of cards and eating of all things sugary and heart-shaped. Not that he really minds; he can’t eat most treats on his gluten-free and casein-free diet, and unlike when he was little and mesmerized by holiday cards, now he—in typical teen fashion—gives cards a cursory look just because he knows he should to be polite. Unless there is money or a gift certificate in the card or something really eye-catching, such as a funny picture or one of those shiny squares that reflects his image, he’s not terribly interested. Knowing Alex’s preferences, my parents usually give him a card that has both shiny and green stuff inside it, and this makes him happy.

When Alex was younger, I used to buy the standard box of valentines for him to sign his name and send to various family members. Depending on what his current interests were, we’d pick out the cards that had characters he liked at the time: everything from Mickey Mouse to NASCAR drivers. Although I thought this was a ritual that he might enjoy, he would hurry through the routine, eager to get back to some activity he really preferred. While he would humor me by going through the motions, one year he thought it was hysterically funny to write “Kenneth” as his name instead of Alex. At the time, outstanding Jeopardy contestant Ken Jennings was Alex’s hero, and he thought he’d use Ken’s name instead of his own. I guess Alex thought my reaction of surprise was amusing because he continued this attempt to use a pen name for the next several months anytime I had him sign his name on a card. As I would hand him the pen to sign the card, he’d break out into a fit of giggles, knowing that I would remind him to write “Alex” and not “Kenneth.” Fortunately, Alex’s handwriting is so poor that probably only Ed or I would know the difference. A later twist on this was during his early teen years when he thought it was humorous to write profanities on cards, just to watch my annoyed reaction. Amazingly, Alex could write four-letter curse words legibly enough that anyone could probably read them, which meant that we imposed a moratorium on card signing for Alex until he got past that stage and simply signed cards for him.

This year, Ed will have Alex sign a card for me, and I will have him sign a card for Ed and another for my parents. Both of us will be thankful that we don’t have to remind him not to write names other than his own or to wrest the pen away from him when we recognize the familiar beginnings of swear words and then have to try to make them look harmless. For Valentine’s Day treats, I bought him marshmallow Peeps and smaller Kraft marshmallows that are heart-shaped and strawberry-flavored, but more importantly are in keeping with his restricted diet. We like to find some small gifts for him, and this year I tracked down an electronic gadget I think he’ll find entertaining. In sorting through one of my desk drawers a few weeks ago, I discovered a toy review from a couple of years ago detailing a Leap Frog educational device called a Crammer, which has hundreds of electronic flashcards for various school subjects, such as math, social studies, and science. Some Internet searching revealed that these handheld learning tools are no longer made, but I was able to track them down at a fraction of the original cost on Amazon and ordered Alex one of the last few in stock. I think that he’ll not only enjoy learning facts on the Crammer this week during the Jeopardy showdown between the IBM computer Watson and two of Alex’s favorite game show contestants Ken Jennings and Brad Rutter, but he’ll also appreciate that I Googled it and bought it on sale from Amazon, his favorite online store. Since I couldn’t find any valentines for “Son” that had the cheap reflective mirrors this year, I settled on one that lists all the things he embodies in comparisons, including the following: “Charmer,” “Prince of a Son,” “Sage,” “Clown,” and even “Attila the Hun.” Somehow the writers at Hallmark know Alex well, or perhaps he’s not too different from other sons, after all. Certainly, the last stanza of this card expresses how Ed and I truly feel about Alex: “But you’re always a son who brings pride by the ton, and you’re loved more as each year goes by!”

Wednesday, February 9, 2011

As a middle school teacher, I often sit in on annual case review conferences for special education students. The law requires that regular education teachers like me be present for these conferences to make sure that students are placed in the least-restrictive environment for their educational needs. The guidance counselors and special education teachers know that I don’t mind being part of these meetings because I sympathize with the parents, having been part of case reviews as a parent when Alex was younger and receiving special education services. Recently, I met with the parents of a special needs child and had a very nice conversation with them, discussing some of the things Ed and I had gone through when Alex was middle-school aged. Also present for this conference were my good friend the guidance counselor and a representative of our county’s special education cooperative whom I did not know prior to this meeting. After the parents and I discussed various issues, this special education representative wanted to know if I would answer some of her questions. Generally, I am fairly open about our experiences, but what I thought would be just a few inquiries about Alex became what felt like an interrogation and made me somewhat uncomfortable.

While I answered her questions directly and elaborated when she wanted more details, I later analyzed some of the things she had asked me and wished I had told her that they were really none of her business. For example, she wanted to know how we had discussed sexuality with Alex. Who asks any parent that? I was particularly uncomfortable with the parents—whom I had also just met that day— sitting there because they seemed uneasy with the topic, too. I told her that we had not gone into a lot of detail with Alex because we were concerned that he might obsess over the ideas, as teenage boys often do. Additionally, I explained that we had taught him basic socially-appropriate behavior about modesty and keeping his hands where they belong so that he doesn’t make others uncomfortable. Furthermore, I went on to explain that Alex learns best by reading, and he has read a few books about puberty and development on his own and seemed satisfied with what he’d learned from them. [An especially good book about the topic I highly recommend is Mary Wrobel’s Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism. Alex found this book at our public library, and I was so impressed with it that I ordered him a copy online from Barnes and Noble.] Anyway, she probably thought I was old-fashioned to hand my kid a book instead of sitting down with him and discussing “the birds and the bees,” but we know what’s best for Alex. Another topic she seemed to want me to explain was why we decided to home school Alex. For some reason, some people find home schooling strange, but we know that choice was best for Alex, who needs one-on-one instruction. Since that explanation didn’t satisfy her, I went on to detail how he had been restrained in a seatbelt chair and made to hold a sign that he could read that said, “IGNORE ME!” in special education preschool, which we felt was not appropriate. Of course, she posed the typical argument against homeschooling—socialization. (I wonder if people think we lock home schooled children in closets.) After explaining that we took Alex to library programs, concerts, sporting events, and other activities, not to mention all the various therapies, I went on to tell her that as a middle school teacher, I know that kids like Alex are easy targets for bullies, and I was not about to subject him to that humiliation and upset. My friend the guidance counselor nodded her head in agreement, as did the parents, which seemed to close that particular topic.

Next, she wanted to know about Alex’s future plans. Had I known that he’d been contacting companies about his latest invention, I could have told her that. Instead, I decided to answer honestly and tell her that I don’t know what the future holds for Alex. Since Alex turned eighteen last year, I’ve gotten more questions about what he’s going to do in life, and I just can’t answer that right now. Although he’s legally an adult, he’s still immature in many ways. While he’s made quite a bit of progress in the past year or so, he’s still not ready for higher education, nor is he ready to hold down a job. However, we have hopes that he will eventually find something fulfilling to do. In the meantime, we continue educating him ourselves and giving him opportunities to develop his potential. Of course, we know that God has a plan for Alex’s future, and we stand on that promise. Finally, with the inquiry nearly over, the woman asked if I would have done anything differently. Now this was a question I could answer confidently. Looking back over Alex’s childhood and the various things we have done, we have no regrets. Certainly, we made mistakes at times—most often out of love for him—but we did the best we could with the knowledge that we had. Most of all, we sought God’s guidance and prayed earnestly. In the end, that’s all that really matters, and the progress Alex has made has been a testimony to God’s faithfulness in our lives.

“So they said to him, ‘Please inquire of God, that we may know whether the journey on which we go will be prosperous.’” Judges 18:5

Sunday, February 6, 2011

The other day, we had a cryptic message on our answering machine. The first surprise was that the message was for Alex, who rarely receives phone calls. The other mystery was that the caller identified himself as being from an invention resources company that Ed and I did not know. According to the message, Alex had apparently requested information regarding an idea he was currently working on and which the caller felt had “marketing potential.” Since Ed and I were unaware of any work Alex had been doing on an invention, this call came as a surprise to us. However, we knew that he’d probably been online and left his name and number with some unsuspecting customer service representative. A few years ago, we discovered that Alex had been researching cars and auto loans online when we started receiving calls from car dealers and insurance salespeople wanting to speak with Alex. Because Alex was only fifteen at the time, I told the callers that Alex did not have a driver’s license or the money to buy a car and apologized that he’d wasted their time. We also took away Alex’s computer privileges for a while to make sure he wasn’t making any online deals.

After this latest call, Ed suggested that we check Alex’s online history to see what he’d been researching and how he’d found this invention company. Going through the list of websites that Alex frequents is always an interesting journey that reveals his interests. Primarily the websites he seeks revolve around Alex’s three C’s: clocks, calendars, and calculators. After wading through all those measuring device searches, I finally found where he’d discovered the company who called him. Apparently, he had to submit a name for his product idea and a brief description of the invention. Since the caller thought it had “marketing potential,” I was very curious as to what he had submitted along with his name and our phone number. When I asked him if he’d come up with any new inventions lately, he told me no very earnestly. Apparently he doesn’t remember what he’d entered, or maybe he’s worried I might steal his brilliant idea and try to pass it off as my own. Ed thinks it probably had something to do with a device that changes voices, which has been a recent obsession. I wonder if they thought he was a crackpot and were just curious to talk to him. Anyway, I guess we’ll have to keep a closer eye on what websites he’s visiting, especially if he’s going to leave his name and number.

While we don’t know what this recent invention might be, Alex has come up with some creative inventions in the past. Several years ago, he created a series of stories about a character named Bill, who lived with his wife Pam and their son Carlos. Since we don’t know anyone named Bill or Carlos, I always wondered where he came up with those names. I guess I should feel honored that he named Bill’s wife after me. Bill worked for our local newspaper, just as my sister’s husband does, until he decided to move to New York, where my in-laws live, so that he could take a job working as a stockbroker on Wall Street—Alex’s dream job at that time. He would type up these stories, which was unusual for him because he really doesn’t like to write stories. Nonetheless, he had a pretty good idea of how to develop plot and character, which made his English teacher parents proud. Another pretty clever invention Alex created was “Kitchen Soccer,” a game in which he would kick a small ball around our kitchen, trying to knock down barriers at the three doorways of our kitchen. He’d line up small paper cups between the kitchen and family room, dining room, and foyer, and he developed a point system for knocking over the cups. Other than the disappearance of Dixie cups from our kitchen dispenser and tripping over them, this was a harmless game kept him amused over several months' time. Maybe like cup stacking games that sell for $14.99, kitchen soccer will become a fad and make Alex rich. I might just keep that invention resources company’s phone number in case Alex decides to become an entrepreneur. Wouldn’t that be something if someday he had a company of his own that sold stocks on Wall Street, where his imaginary friend Bill found the job of his dreams? On the other hand, mothers would be tripping over kitchen soccer cups, just as I did; I’m not sure I’m ready to let Alex share his inventions with the world just yet.

“Then I sent to him, saying, ‘No such things as you say are being done, but you invent them in your own heart.’” Nehemiah 6:8

Wednesday, February 2, 2011

Since today is Groundhog Day, I’m predicting that Punxsutawney Phil, who is apparently the official groundhog to determine “scientifically” how much longer winter will last, will see his shadow and condemn us to six more weeks of winter. Hanging around Alex, who loves meteorology, statistics, probability, and the Internet, has made me a follower of Phil the groundhog. In fact, Alex introduced me to the official groundhog website, where we learned that in the past twenty years, Punxsutawney Phil has seen his shadow every year except 1995, 1997, 1999, and 2007. Therefore, the odds are in my favor in predicting that Phil will see his shadow today. Besides, here in Northwest Indiana, we don’t care what the groundhog sees or doesn’t see because we know we’re in for six more weeks of winter weather. Coincidentally, we’re under a blizzard warning today and could get nearly two feet of snow. I wonder what Phil would say about that.

Perhaps because he was born on one of the coldest days of the year, Alex doesn’t really mind winter weather. When he was younger, he used to anticipate eagerly when he could write his name in the snow with a stick. One of his early experiences in snow involved a makeshift sled I made for him by putting him in a laundry basket, wrapping blankets around him, and pulling him with a rope tied to the handle. He seemed to enjoy himself until I decided to go faster and wound up tipping over the basket and sending Alex face first into the snow. We have this incident on videotape, which he has watched repeatedly, yet he doesn’t seem traumatized by the memory of being dumped into the snow accidentally. Now he likes to look up Weather Channel videos on You Tube, looking for record cold temperatures and record snowfalls. One of his favorites is a weather report from February 3, 1989, before he was even born, from Winnipeg, Canada, when the temperature dipped to -35 degrees Celsius, or -31 degrees Fahrenheit. In addition to enjoying watching these extreme temperatures go across the screen, he also likes their choice of background music—an odd choice but a pleasant song—Glen Campbell’s “Wichita Lineman.” Alex has watched that video dozens of times, but it always brings the same response of swaying to the music as he smiles and laughs at the bitter cold temperature reports.

While Alex never seems to mind bundling up for cold weather, getting his hands covered is quite a trick. Putting gloves on him is nearly impossible; he can’t seem to figure out how to put his fingers and thumbs where they should go. When he was younger, finding mittens for him was the easy solution because he only had to navigate his thumbs into the proper positions. As his hands grew, I had trouble finding mittens that would fit his long fingers. However, this year, I was able to find men’s mittens at J.C. Penney’s, and this was the perfect solution for him. Another issue he solved for himself is dealing with his nervousness about going up our driveway in snowy weather. Since our driveway is on an incline, getting up the slope in the car when the pavement is snow-covered sometimes requires getting a running start, and at times we spin the tires trying to get into the garage. This makes Alex anxious, so he’ll grip the car door handle tightly and sometimes close his eyes until we reach the top of the slope. I would guess that he’ll never be a fan of roller coasters, judging by how he reacts to going up the minor hill of our driveway. Shoveling that driveway has become a task he has finally learned to do this winter under Ed’s guidance. This has been the first winter he has understood how to push the snow to the edges with a snow shovel, and he has seemed proud of this accomplishment. However, the novelty may have disappeared already in Alex’s desire to help. Last week, Ed asked Alex if he wanted to clear the driveway with him, and Alex didn’t seem particularly interested in the offer. Previously, Alex would immediately jump up, eager to go out in the snow. This time, he told Ed no and went on to explain that he was watching a basketball game on television. Although Alex’s enthusiasm for doing this task was nice while it lasted, his refusal to interrupt his leisure activity makes him more of a typical teenager. Progress is often measured in unusual ways, but we welcome it nonetheless.

“Praise the Lord from the earth, you creatures of the ocean depths, fire and hail, snow and clouds, wind and weather that obey him...” Psalm 148:7-8

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.